By: Yalinie Kulandaivelu
If you have been following the news over the past year, you’ve likely heard about the lack of data that the Canadian healthcare system collects on Black Indigenous, and other people of colour, as well as refugees and immigrants. A lack of data essentially renders large swathes of the population invisible. It also results in the inability to prove that problems exist where these populations are concerned. For instance, in obstetric care, a lack of systematic collection and reporting of racism and obstetric violence has allowed the healthcare system and policymakers to ignore the inequities Black women face in the delivery room and in their maternal health care.
Historically, when Black individuals have been included in data collection and medical research, they were exploited and actively harmed by healthcare providers and researchers, and left a lasting mistrust of healthcare systems and the data that were collected were never used to improve care for Black individuals. Examples include Henrietta Lacks whose cancer cells were exploited for medical research and profit without her or her family’s consent; the Black women who were harmed in the development of the speculum tool for gynecologic exams; and the harm to the Black populations in Macon County, Alabama by the Tuskegee Institute in their study of syphilis.
However, data collection itself is not the outcome that is being sought - it is a means to an end. The end goal is to have systems that are effectively designed for Black and other people of colour. The information that is collected must be collected ethically and used to effectively reduce inequities in design, services, and programs. And these designs, services, and programs must be improved upon regularly as our understanding of these issues improves.
Now, when news and media outlets catch wind of these issues and report on them, the result is always a call for further research and data in order to characterize the problem. Yet, these steps are often light years behind on the work that is needed to address the problem in a timely manner. Furthermore, they usually identify race as the problem when the problem is racism. Racism in maternal health care and experiences of obstetric violence have been reported in the media and by Black communities since the 1960s - even if medical research has largely remained behind on adequately documenting the problem. Repeatedly focusing time, money, and effort to research the problem over again takes resources and attention away from developing and testing real solutions that can reduce these inequities now.
This chicken and egg problem has allowed health systems, governments, and policymakers to maintain the status quo – a world that is not designed for Black women.
Examples of how the world has not been designed for Black, Indigenous, and other people of colour, especially women in these groups, are numerous and span all sectors. Activity trackers that are not accurate on darker skin, Instagram and YouTube algorithms that bias against promoting Black creators, automatic soap dispensers that do not detect dark skin, facial recognition that misgenders and misidentifies Black women, sunscreens that are not made for darker skin, surgical and N95 masks that do not fit non-white faces are among many of the gross systemic STEM and medical specific inequalities Black individuals face. When partnered with other societal and systemic STEM related inequalities such as domestic violence and workplace violence policies that are not designed to protect women of colour, a lack of reporting on police brutality and violence against Black women, biased police counterterrorism tools, and drugs and vaccines that have not been tested in BIPOC populations let alone BIPOC pregnant women our Black population is being left at a gross disadvantage.
These inequities may be addressed in the short term by greater awareness and demands for action. However, to ensure that these inequities are dealt with immediately and preventative strategies are put in place for long-term action, we will require a whole generation of Black women scientists, engineers, and innovators. No other group is better positioned to understand the nuances of how these inequities are created and perpetuated by design, institutions, algorithms, and policies than Black women. Furthermore, this generation of scientists, researchers, and innovators is uniquely positioned to address the inequities experienced by the wide range of Black women. Maternal health care is yet to recognize that Black women are not a monolith and reducing inequities will require targeted solutions for those experienced by religious, ethnic, and sexual and gender minority Black women as well as immigrant and refugee Black women.
Further, in maternal health care, adequate programs and policies are still not in place to address the higher rates of morbidity and mortality among Black women. Policies that address racism and obstetric violence are yet to be implemented despite the role they play in Black maternal health. Programs addressing disparities in rates of pre-eclampsia, C-sections, and post-partum hemorrhage are largely absent as well. Oftentimes when programs are created they are not adequately implemented because they have not been developed by or with Black women involved.
However, we are beginning to see changes that place Black voices at the centre of advancing access to care for Black communities, beginning with the collection of health data, as discussed within the Engagement, Governance, Access, and Protection (EGAP) Framework. Written by the Black Health Equity Working Group, which is a collective made up of Black health sector leaders and health equity experts in Ontario, this framework emphasizes that collecting race-based data must be used to “create pathways for dismantling structural anti- Black racism and advancing health equity.” To this end, EGAP outlines how race-based data from Black communities can be collected, managed, and analyzed in order to advance health equity, and highlights the importance of putting greater control of this data into the hands of Black communities. Read the full EGAP report HERE.
Ultimately, the importance of Black women in science, technology, engineering, and medicine (STEM) fields goes beyond mere representation. Ensuring Black women are involved at all levels in these fields can and will quite literally save lives and build a better world for everyone.